Facial paralysis + synkinesis

[amymeri]

I am 4 months post op for a 4 cm neuroma.  2 days after surgery I developed facial paralysis that is now slowly (oh so slowly) healing.  I am developing some synkinesis as I heal (my mouth/ cheek twitches when I try to close my eye, and now I notice my lower lid twitches when I move my cheek).  I am trying to stop this before it settles in permanently by using techniques I have learned from J. Diehls articles.

I am wondering if anyone has synkinesis, or has stopped it in its tracks, or has undergone NMR at a site in the Eastern half of the U.S.

Amy

[Pembo]

Hi Amy. I am 2 yrs, 2 months post op. I had full facial paralysis and it started to move again very slowly at 4 months. Just this summer I met with Todd at UPMC (Pittsburgh). I have already improved in just 6 weeks.  I highly recommend him if you can get to Pittsburgh easily. He is awesome! Email me with any questions....

[matti]

I too have synkinesis. Everytime I blink, the corner of my mouth and cheek pull up. I wake up everyday with muscle spasms and weakness in my cheek and neck, due to closing my eye. If I touch the side of my nose, I can feel sensation on the side of my head and vice versa. I have various other things related to synkinesis, but these are the most annoying.

I wish I had heard of facial retraining after my surgery 8 years ago. I had great surgeons but post op info was not so great. I think it is too late for me.

Cheryl

[Jeanlea]

I asked my doctor about facial retraining.  I have a little bit of movement returning, but no synkinesis.  He said that it wouldn't help me.

Jean

[amymeri]

From what I can tell it is never too late for retraining.  And sometimes no movement is actually mass movement in two directions at once so it only looks like no movement.  Check out bellspalsy.ws and then go to the retraining information which is quite helpful.  Keep following the links and read all about synkinesis, flaccid paralysis and treatment.

I am hoping that with vigilence I can reduce the amount of synkinesis I experience.  At the 6 month mark I am going to explore retraining...I think everyone I am talked to says no use before then.

Thanks for the Pittsburgh connection.  I have relatives there and could stay with them for the intitial visits which would save me money. 

[Pembo]

Jean, Don't listen to your doctor, facial retraining may help. I have been amazed at the progress, ever so slight, that I've made in the last 6 weeks alone. For example at my first visit when I smiled the AN side of my mouth reacted much slower. After working with the mirror it now responds as fast as the other side.  I didn't think I had any synkinesis but Todd picked up on some right away. Another example, my neck muscles tighten when I smile which could be causing my smile to pull down. I'm working on that as well.

I don't believe the docs think alot of things actually help us and as my friend the PT told me, the docs don't know it all....Keep the faith.............

As for Pittsburgh, they are great about out of towners (we are 2.5 hours away.) The first visit was 3 hrs, I stayed the night and did 2 hrs the next day. My next visit was 3 hours.

[matti]

Pembo - Maybe it's not too late for me after all

[kimmy]

Hi Amy. I have synkinesis too. I'm now 12 months post op and have had my first clear MRI!!!!  I still have trouble with dry mouth and nose but mostly my eye (AN side) waters when my mouth should and my eye closes when I eat. It closes when I smile too. My smile is still a little bit weak on the AN side.  I had a time when the top of the end of my nose twitched all the time (like Bewitched!) and I was told it was the nerve endings healing.  I am hoping that another 12 months should see it much better. We don't have facial re-training here in the UK but the websites suggested by these guys have been very helpful. I hope you get some help too.